Hi all,
This is a really illuminating article about low TSH and central Hypothyroidism.
It outlines a case study about a woman who was undiagnosed for 23 years because no one thought to test anything other than her TSH, her free T4and T3 were hardly registering.
It was only when a Biochemist looked into her case that she finally got the treatment she needed.
thyroidpatients.ca/2021/05/...
I hope the link works as I'm not very savvy on the computer, maybe copy and paste will work. 
Link works fine knitwitty (go to the top of the class 😊)
Unfortunately no surprises there but it's absolutely shameful. Will doctors ever learn? Doubtful, certainly not in my lifetime I suspect. Did that poor patient get an apology? Probably not, yet lost so many years, how she must have suffered and I wonder how many times she was told it was all in her head!
I haven't read the whole article but will save it and read/digest it later.
Thank goodness it worked !! last time I posted a link someone couldn't open it, but I think it was because they were using a phone.It seems we thyroid sufferers are suffering around the world, I just can't get my head around it, I really don't understand why more doctors can't be bothered to get to the root of our problems. It must be more efficient both from a time point of view and a cost point of view to treat us correctly in the first place than leave us to languish for , as in this case , many years.
Lots of interesting stuff in there.
I started posting about it before lunch, came back after, finished posting - then saw your post!
I have deleted mine as it added nothing. Though I have taken the liberty of adding the picture I had on my post - taken from the article. Hopefully it will help your post to stand out a little and get more of the attention it deserves.
Good stuff, thanks Knitwitty will have a proper read, and add a well deserved 'like' to Tania's 'thyroidpatients.ca' page later.
It is a shame that Tania's blogs get so few Likes.
I suspect this is largely because people don't notice the Like button. I think you also have to have signed up and logged in.
Yes , you do .. i had to sign up and log in to something called wordpress ? which goes against the grain for a techno phobe like me , but i decided to make an exception for Tania, as i'd be lost without her helpful pictures.
I have tried to like this but for some reason the like button is not responding .
Likes here on HU are not working properly at the moment!
If you click on Like, you might just see a faint grey surround appear. Then refresh the page in your browser. It will update to show your Like. Or often it will!
Thank you for posting knitwitty. I wonder how such research can be brought to the attention of those who influence and impact the treatment of hypothyroidism?
This poor woman and her treatment or lack thereof reflects each and everyone of us who are travelling a similar road.
Thanks so much for posting this!! I’m sure this is my situation. Been told by NHS for years no thyroid problems, despite many symptoms. Private hormone specialist I employed to help me with PMDD and miscarriage found my TSH was normal but T3/T4 too low. I feel INCREDIBLE on the medication... cured my PMDD and so much more energy, better sleep, no aches and pains, no constipation... have got a neurologist appointment this week to check no pituitary problems. I’m considering whether it’s worth petitioning the UK government for more T3/T4 testing... so many women having hysterectomy for PMDD which could potentially be avoided with a simple blood test and a pill the size of contraception... it’s insane!
The issue with T4 and T3 testing is that they are seen as costs. Any of the possible benefits are almost entirely missed, or ignored.
Consider a mythical patient who has a TSH of 1. We then do FT4 and FT3 tests and find that both are absolutely fine. This is a cost (of the two additional tests) but no benefit seen in this case. (Other than peace of mind.)
That doing T4 and T3 on a thousand patients might find a hundred with questionable results, ten with severe issues, and one with a desperately severe issue, is somehow not seen. The cost of a thousand tests might well be justifiable for that one desperately severe case that is detected and, hopefully, then treated. But the accountancy attitudes will see 900 unjustifiable tests, 90 reluctantly acceptable, 9 acceptable and one justified.
If you could identify the 900 without doing the T4 and T3 tests, they might have a point. You can't. So they don't.
How do we get that across when even many of the doctors involved don't see it the way we do?
Completely agree Helvella, one of the problems seems to be that many doctors either don't know about or recognise the many hypothyroid symptoms. This would at least be a starting point for instigating further testing, rather than just dishing out antidepressants , statins, BP tablets ...the list goes on.
If you present with hypothyroid symptoms over and over again at least do a comprehensive set of blood tests which are often either refused by the GP or even if the GP requests them they are refused by the testing labs if TSH falls anywhere in the normal range.
In my own case I only had TSH Free T4 and Free T3 tested when my TSH was way below the normal range it was then discovered that my Free T4 was about 27 and Free T3 about 9 , no antibodies tested even though requested, within a few weeks the results had swung in the completely opposite direction and because the TSH was 4+ the labs refused to do anything else. I only discovered the extent of my problems through private testing and guidance from this forum.
I can't for the life of me believe that repeat prescribing of any of the above medications is more cost effective than a correct diagnosis in the first place.
I think a wake up call is needed with regard to training of GP's in recognising thyroid problems, heaven only knows when/if that will happen, I suspect it would have already happened if the people presenting were predominantly male. There are too m any opportunities to blame our symptoms on a multitude of other things.
That’s completely understandable, but what about testing for certain specific symptoms which have been unresponsive to other lines of support/ medication.
In 20 years I have had thousands of GP appointments and many gynae appointments for PMDD, countless scans, 2 operations under general anaesthetic to try and solve it (ovary removal and coil) 2 rounds of NHS paid counselling, many prescriptions for antidepressants and contraception and zoladex (18 monthly chemical menopause- about £200 a pop I believe). My PMDD has been a huge factor in my weight gain which may unfortunately lead to future problems (although I’ve lost 4kg on levothyroxine so hopefully it won’t!) all of the above costing the NHS huge amounts. I was approved for a hysterectomy at the cost of about £6k
Not to mention the thousands I’ve spent on vitamins, counselling, osteopathy, acupuncture etc. There are thousands of women just like me in the UK all undergoing these expensive appointments and treatments in a bid to not feel suicidal the minute they ovulate.
And there are women who have cost much more than me- psychiatric stays, expensive psychiatric drugs, police and ambulance call outs
I’m not saying it would work for everyone, but there is clear evidence from abroad (my private GP has been reading new research) that T3/4 testing and treatment can be hugely beneficial in treating women with severe hormonal difficulties... and yet it is unheard of here by all but a small minority. Not one GP, gynae, nutritionist... no one apart from my current private specialist has ever mentioned it.
If I’d have had my levels tested and treated properly 15 or so years ago, I might have saved and the NHS and myself a fortune, not to mention had a drastically improved quality of life not ruled by my cycle.
I’m not suggesting they measure T3/4 in every person who comes along, but surely a little more widely dependant on symptoms would be better value in the long term?
I'd like a wholesale move towards enhanced blood testing.
At one time, each and every element of blood tests had to be considered carefully. Even what we now know as full blood count (FBC) (Complete Blood Count - CBC - in the USA). That was because they used trained people to do the tests using microscopes, etc.
Now, the test is highly computerised, very inexpensive, and no-one would ever consider not doing the whole lot.
How about a future in which a battery of tests are done at once? The automated lab machines are getting there but have some issues still. Primarily cost. But also standardisation across machines, laboratories, manufacturers - worldwide.
Just recently someone mentioned a tiny device for doing the phlebotomy - such that we could do our own thus reducing that cost significantly.
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Worriied about my daughters thyroid test results
Daughter's thyroid results
Suppressed TSH again!
